After some advice and hand-holding.

[Galena]

Firstly, sorry if this is long...

DD was born at 27 weeks and has done really well in the past 2 years - no worries except asthma, and the fact she's not yet walking. She's 2 in 11 days and crawls, pulls to stand and cruises. She also walks pushing something or holding our fingers. However, she has a tendency to walk on her toes and cross her legs as she walks. She as been seeing the physio for the past few months who began by reassuring us it was all because her hips are far too mobile. We've had exercises to do with her which have worked really well and she's begun standing unaided for 20-30 seconds and walks just holding one hand. She loves it and often says 'Walk walk!'

I was really looking forward to yesterday's physio visit because I thought the physio would be really pleased with her progress. How wrong I was!

She needs to do much more cruising - sideways walking - to make sure her feet turn out instead of in when walking. Unfortunately she hates doing this so it's going to be a bit tricky - but definitely possible and this is fine. However, the physio wants to refer her to one of the community paeds.

I'm a little cross with her, as she wrote something on the referral form and then covered it up. We filled in the rest of the form together, then she asked if I'd seen what she'd written. I hadn't, and said this and she then said 'The thing is, any diagnosis has to come from a paed. But don't worry - she'll cope fine with mainstream school no problem and the physio service will be there to support her. It may be that she just needs someone to watch her during PE and playtimes and we can get that put in place. She certainly won't need to go to one of the special schools.' Well, I'm glad she'll cope with mainstream schooling (I didn't really think she wouldn't) but (excuse the language) what the hell is she thinking is wrong with DD?!

I'm assuming she's thinking possible Cerebral Palsy, but I can't be sure. If it is, I guess it's incredibly mild for her to have got to this stage without it being picked up. What else could it be?

Anyone with a child with CP want to share what is likely to happen now if it is? She's being referred to an orthotist for splints with 'knobbly bottoms' to relax her toes because she's a real toe-clencher. It was just a real shock yesterday as we'd been reassured it wasn't anything major. Not sure when we'll see the paed, but until we do I'll be worrying.

Thanks (sorry if this is a bit muddled - I just needed to get it all down!)

It could be cp or something else like Ehlers danlos syndrome (like my ds), so try not to panic yet. Although I appreciate that she may have ideas about a dx, but acknowledges she is not qualified to make a dx , it is completely inappriopriate in my opinion for her to write in front of you, and then cover it up. I would go to see your gp, explain what has happened, and get them to contact the physio and the paed to whom she has been referred and get the in formation you are entitled to.

Try not to stress too much in the meantime. Others with more experiences of cp will be along soon I am sure.

Thanks Sparkle. I'll try not to stress. I think the physio thought I had seen what she had written and was trying to set my mind at rest. Guess I'll find out soon enough. I'd rather not rock the boat as she's a great physio, lovely with DD and may well be involved with her for a fair old while yet...

I know it is hard not to get stressed about these things though. A good physio is a godsend, whatever the dx, it is just a shame that not all medical professionals are created equal!